When you think of mesothelioma research, you might picture scientists in white lab coats peering into microscopes or drawing samples from patients. But, just as mesothelioma has many aspects, so does mesothelioma research. The emotional wellbeing of mesothelioma patients can have a big impact on their physical health. A new study on improving the patient experience when receiving a diagnosis of mesothelioma sheds light on the needs of patients and their families at this crucial time.
Kazan Law, the sponsor of the Mesothelioma Circle website, is also a sponsor of the Young Investigator Awards at the conference of the International Mesothelioma Interest Group (iMig). These awards recognize research, like this study of what patients need when receiving a diagnosis of mesothelioma, that make life better for mesothelioma patients and their families.
Challenges When Receiving a Diagnosis of Mesothelioma
Receiving a diagnosis of mesothelioma is a shock to the system. In a day, your plans for your daily life and for your future are upended. If you’re a family member of someone receiving a diagnosis of mesothelioma, your world is turned upside down too.
A group of researchers from the University of Sheffield and Sheffield Teaching Hospital in the UK led by Bethany Taylor, Mesothelioma UK, and the National Health Service (NHS) Foundation Trust, interviewed patients, families, and nurses who specialize in mesothelioma. The research team started from the belief that poor communication of this traumatic message can lead to “lasting distress, confusion and resentment.”
The British researchers looked at not only the moment when a family is receiving a diagnosis of mesothelioma but also the communication between healthcare providers and patients before and after. Their goal was to find out the best plan for delivering the bad news in the most supportive way.
Best Practices for Delivering a Mesothelioma Diagnosis
The findings of this study are specific to the healthcare system in the UK. In Great Britain, all residents are fully covered under the country’s NHS, a nationalized health system. Best practices for delivering care can be adopted across the whole system, once they are accepted. However, the lessons learned in this research are valuable for healthcare providers in the US and other countries as well.
The study found that the difficulty of understanding this complex disease was one of the challenges for families receiving a diagnosis of mesothelioma. This is a cancer that affects an organ many people have never heard of before. In addition to the distress of a cancer diagnosis, patients and families suddenly need to get a medical education.
The participants in the study asked that doctors and other medical practitioners be as honest as possible when they give a mesothelioma diagnosis. Clear and complete information made patients feel more at ease.
The researchers also found that it was important for patients to be referred as quickly as possible to a specialist. At the NHS, that specialist is a nurse trained to be a mesothelioma specialist. When there was a gap between the delivery of the mesothelioma diagnosis and the referral to a mesothelioma nurse, the anxiety of patients and their families increased. Once they were connected to a skilled medical professional with a clear understanding of mesothelioma, their fears were reduced. But, if the gap was too long, it could result in a lasting distrust of the system and fear that the patient would not be properly cared for.
Although the nurses interviewed were knowledgeable about mesothelioma, they asked for additional training to help them engage with patients and their families. They reported that they hadn’t received any training about how to communicate a diagnosis.
The British study is not yet complete. The researchers are drafting recommendations to improve the experience of patients when receiving a mesothelioma diagnosis. The funding from the Young Investigators Award will help them finalize their work. Gatherings like the iMig conference allow them to spread this helpful information to the wider mesothelioma community.
Emotional Support When Receiving a Diagnosis of Mesothelioma
When you are receiving a diagnosis of mesothelioma, your questions will likely be all about your physical health. You want to know what treatments you will receive, how the disease might progress, how much time you have left, and what physical symptoms you can expect. But your mental and emotional health are vital too. Too many mesothelioma patients don’t get the treatment and support they need for the depression and other issues that often accompany this scary diagnosis.
In that initial meeting with your medical team or soon after, don’t be afraid to ask about resources to support you and your caregivers as you struggle with mesothelioma. Stress and worry can depress your immune system, weakening your body’s defenses just when you need them the most.
One important thing to recognize is that you are not alone. Many cancer patients are understandably distressed. An online or in person mesothelioma support group, counseling, meditation, and yoga can all help to ease your anxiety and calm your mind.
This is just as true for the caregiver as it is for the patient. The stress of receiving a mesothelioma diagnosis for someone you love and the sadness that comes from watching your family member hurting is real. Family members need emotional support, too.
After receiving a diagnosis of mesothelioma, you can expect some physical distress. There’s no reason to add unnecessary mental distress to your life on top of that.
Young Investigator Awards Highlight All Aspects of Mesothelioma Care
This year’s Young Investigator Awards highlighted research on a range of mesothelioma topics: everything from a study of checkpoint blockers to improved diagnostic tools to best practices in multimodal mesothelioma treatment. The research by this British team is another welcome addition to the body of knowledge about mesothelioma treatment and care.
The iMig organization was founded in the early 1990s to turn the focus of mesothelioma research from the causes of the disease to its treatment. The founders of the group wanted to foster collaboration among the teams of mesothelioma researchers spread out across the globe.
The Young Investigator Awards, along with all the research presented at the 2018 conference, provide proof that the organization is achieving its goal. By sharing information across borders and across disciplines, iMig helps move the science of mesothelioma treatment forward at a faster pace.
That’s good news for patients receiving a diagnosis of mesothelioma. Time is one thing they don’t have to spare.